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‘Their body, their data’: how portals can put patients in charge

Portals let patients see their own medical information through a secure website. But why have they been so slow to catch on?

If a patient at the Queen Elizabeth hospital Birmingham (QEHB) wants to see their blood test results, it couldn’t be easier. They log on, via their phone or computer, to a secure web portal called myhealth@QEHB and look at a record that displays their results, as well as information such as GP referral letters and appointment details. Not only that, but patients can use the portal to create a journal of their illness (that they can then refer to during consultations), send a question to their clinician, or upload files.

The portal, launched in 2012 in response to patient demand, is used solely by patients, not clinicians, explains Katie Squire, informatics programme manager quality assurance: “If they go to their GPs and get some printed blood results or visit another secondary care provider and get another letter they can upload those into the portal. So it’s their portal for them to access.”

Initially available to patients with long-term conditions, such as diabetes, the portal is now offered to everyone who attends the hospital, about half of whom take it up. Soon patients will be able to use the portal for video consultations, incorporating online chat and the ability to share documents. The audio recording of the consultation, and any text shared, will be saved so that both patients and clinicians can refer to it again.

Patients really do know best
The project is an example of a growing trend towards giving more power to patients. Mohammad Al-Ubaydli, chief executive of Patients Know Best (PKB), which provides patient portal software, argues that giving patients access to their own data is an important shift: “In the same way that you ask the patient permission to operate on them, you should need to ask them permission to look at their data. It’s their body, their data.”

But even though the Five Year Forward View plans for all patients to have access to their medical and care records by 2020, only a handful of patient portals have been implemented, at least in secondary care. In primary care, it’s a different story: since 2015, GPs have offered patients access to a summary of their record, though they must provide proof of identity first.

So, what’s the hold-up? Partly it’s a lack of digital maturity. Squire’s colleague Jim Williams, head of application development, points out that QEHB, unlike other hospitals that are still reliant on paper, has digitised many of its internal systems, so the portal is able to draw data from a range of internal sources: “If you haven’t got the data the application isn’t of any great use.”

There are also information governance challenges (myhealth@QEHB uses the same security mechanism as internet banking) and cultural resistance. Matt Murphy, managing director of primary care commissioning, community care and patient facing services at software supplier Emis, recognises that some GPs see online access as a burden because it’s “another channel they’ve got to manage”. In practice, however, some have seen efficiency benefits: Murphy cites the Swan practice in Buckingham, which has saved 40 staff days a year simply by allowing patients to view their test results online instead of ringing the practice.

Less time in clinic
This reduction in phone calls is cited by others, such as Derriford hospital in Plymouth, which since 2014 has been using the PKB portal to give more than 300 HIV patients access to their medical data and send messages to clinicians. But the main benefit is the control it gives to the patients. Zoe Warwick, consultant in HIV and sexual health, says the portal has helped patients managing a long-term chronic illness to get on with their lives without the interruption of clinic appointments. Some patients have sent photos of rashes while on holiday abroad, so the doctor can assess whether the rash is related to their medication or has another cause. “They want to work, they want to travel, and this just allows them to communicate with us and spend less time in clinic,” she says.

Health providers have found that portal technology can change the nature of the patient-doctor relationship. Since 2013, cancer patients have been able to gain access to information about their illness, such as histopathology reports and summaries of imaging reports, as a result of a collaboration between Cancer Research UK, the Brains Trust, and the National Cancer Registration Service, which keeps track of cancer data in England. Hannah Keartland, Cancer Research UK’s head of information innovation, says the project “enables shared decision-making between patients and their clinicians, and also gives them the ability to reflect on information outside the appointment”.

The project is now building an application interface give patients access to other portals holding their data. “A lot of the patients will have comorbidities,” says Keartland. “They don’t just want to log in and see their cancer data, they want to log into one system and see all of their records all in one place.”

Ultimately, the goal will be to bring data from all providers together. The current approach, says Al-Ubaydli, is limited because the GP patient portal holds a patient’s primary care data, while the hospital portal holds their hospital data: “That’s why you have to have a patient controlled patient portal, and not an institutional one that’s locked.”

It requires a degree of collaboration that may be challenging, but the key is to take a patient-centric approach, he says: “The healthcare system will say it’s hard, but the difficulty in co-operating disappears when everybody just works with the patient.”

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